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Author
Topic: PRIMER FOR NEW ACTIVISTS, AND THOSE THAT WANT TO MAKE A DIFFERENCE. (Read 3621 times)

I promised that I would post another thread, discussing the possibilities of becoming involved in the health and welfare of all of us.

There are things that you need to know ahead of time, which will make this quest easier, and more productive.

First of all, most of all the HIV care in the United States, is funded primarily with money from the Health and Human Services, (HHS) department of the federal government. This is done through the Ryan White Comprehensive AIDS Resource Emergency, (CARE) Act, (RWCA). This act was created in the early nineties, due largely to the expense of HIV therapy, and most insurance companies were dropping or not insuring anyone with HIV. More and more people living with HIV were becoming destitute and having to sell everything they owned. This meant that on very short order, there were thousands and thousands of people that were independent and in the work force, but because of this viral protein, were destined to become poor, sell their homes and live under a bridge in their cars. The government made this decision so that people would stay off the welfare rolls, and still have some independence and still be able to work. So you see, no matter what anyone tells you, this act was created for the working population and not those that were destitute already for reasons that apply to them.

The Grantor of RW funds is actually HHS, and the states are the grantee. How the states handle the RW funds is largely up to the states, as the legislation is very vague about this particular point. There are several areas of RW funding and they are called Titles. There is Title I, which are defined as Eligible Metropolitan Area, (EMA). It is my understanding that Title I areas are funded directly by HHS, and they apply for that funding directly. Title II, States, or rural areas. Title III, Community Based Programs Title IV, Children Youth and Families. Most of you living outside of cities will be covered by the Title II funds, and those of you living in the larger cities will be funded by Title I funds. At any rate, they are all covered under the Ryan White CARE Act.

Many states have Consortia, which are composed of all kinds of people or organizations that are involved with supporting PLWHA in some way. This can and should be, Health care providers, like Doctors and Nurses, but it can also be Churches, Clubs, Community Groups, Businesses, and just about anyone interested in bringing a healthy life to PLWHA. The boundaries and scope of work of consortium are sometimes made up of counties, due to the distribution of the HIV population of any given state. Consortia are sometimes called Forums, but the work is the same in any case, and sometimes States will have a Statewide Consortium because they don’t have enough PLWHA to divide the state into separate areas. In this case, RWCA is most commonly administered by the State Health Department. These Consortia are the ones that give oversight to the RW Grants, and are actually the body that must create the specific groups of services that will be funded for any given Consortia area. For example; this year, HHS requires six of the many categories that are available for funding, are in fact funded. On our allocations committee, we funded Medical Care, (Doctor visits, and all attending medical costs), Medications assistance, (AIDS Drug Assistant Program) Dental, Travel, and a few others I don’t recall right now. What the line items can be funded are covered in Section V of the RWCA Manual. These line items will then be assigned a budget figure and that is all that any line item will get for the next contract year. Most Consortia require a certain number of Consumers, or Clients, or People Living With HIV/AIDS, (PLWHA) or any number of names that one wants to use to describe us. They don’t do this out of the kindness of the heart, it is actually part of the legislation that requires all Ryan White Grantees MUST include a certain percentage of PLWHA. So, what this means is; if your particular provider is not providing some of the basic services that are required by law, then it is up to us to find those glitches and do something about it.

Many AIDS Service Organizations are private, and operate as Non Profit entities. They are actually given Ryan White funds through the State Department of Health, through a Request for Proposal, (RFP) process that comes due at different times of the year, depending on what state you live in. All of these organizations are required to have boards, and this is one area that is almost always ignored by PLWHA in doing HIV work. You may ask to attend the board meetings of your ASO, and they are NOT supposed to refuse you access. Further, you may also ask to serve as a board member of the ASO, as this is considered brownie points by HHS in Washington when they apply for funding. HHS still is no notice of any granting of funds, even if it is granted by the States. HHS is still the ultimate grantor of all HIV Public funding. There are also ASOs that are privately funded, and here you will have a more daunting challenge to become a participant in their operation, as they are not beholden to the government for any funding. Fortunately, these types of organizations are more often than not, more open to PLWHA, so it is still worth the effort to try to be a part of that kind of work.

Where do you find other affected people like yourself? That one is easy, at the consortium. Your next step will be the big one. The next step is to go to your RWCA Advisory Council, which in Title II areas, is usually at the State Capitol and the State Health Department. No, don’t freak out; as a person Living With AIDS, they cannot keep you out of any of these meetings or departments. I am so totally serious about this; the whole process requires all of our participation.

Now I know many of you work, and unfortunately, few of these meetings are ever held after work, so scheduling time off, to go to a meeting at the State Capital is really considered a good thing by most employers, and often you can get the time for free. Otherwise, it is really a worth while thing to use some vacation time for.

Here is a link that you will need to go to. Print out this manual if you can, and keep it close to your heart. The answers to everything HIV in the United States are contained in these easy to read pages. Even the Ryan White Legislation is part of the contents, so you can always reference everything back to this book. If you have the ability, place it on a CD with your computer, so that you always have it with you, even in meetings. Read and learn the sections on ASOs, Consortia, and anything connected with things in your particular states. This manual is chock full of “may” “maybe” “can” and many other very vague words, so it is up to us to instigate change and conformity to the laws. Learn this book and you will have more power than most of the Civil Servants in your states.

A few cautionary things before you start your quest. Believe nothing you hear, and only believe half of what you see. Trust nobody in HIV work unless they have proven to you that their intent is pure of heart, and that they are in the work for the right reason. I say this, due to the large number of people who are just doing this for a “job”, and in doing so, will become very lazy in the performance of the work. Remember, many of you have case managers that know absolutely nothing about HIV or Ryan White CARE Act. It is our responsibility to instruct and inform them when something is not right. One further point that is very important since I authored this originally; the President has now appointed a Conservative Baptist Evangelical Minister as the nation's head of AIDS. This tells me that the glove has been thrown down, and the rest is up to us.

So how ‘bout it? Is involving yourself in your own care, worth the investment in time and energy. I say yes, but then you knew that. The personal sense of accomplishment and well being that I get from doing this, are intrinsically tied to my work with HIV. I have never had any rejection from the state, either here in Arizona, or New Mexico. This is not to say I have never pissed anyone off. No that is far from the truth, but in the end, those like US that are LIVING this shit, always come out on top, because I don’t care how high up the Civil Employee is, it looks like shit to the upper management, and State Legislators, if someone is trying to win a fight with someone who is SUCCESSFULLY Living With AIDS.

Good fortune, my fellow warriors, and may the Gods be with you on your new and exciting quest for equality as People Living With HIV/AIDS.

Thanks for reading.(any questions about the Ryan White Manual should be placed in this thread, as there are many of you who will learn from the answers, and there are others here who know the manual as well, or better, than I do.)

In Love and Support. (Now go do your homework!)

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Thanks for reading.(any questions about the Ryan White Manual should be placed in this thread, as there are many of you who will learn from the answers, and there are others here who know the manual as well, or better, than I do.)

In Love and Support. (Now go do your homework!)

And Thank You for posting the link!

Now, I have work to do ....

J. R.

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It goes like thisThe fourth, the fifth,The minor fall, the major lift,The baffled king composing Hallelujah!

I find this work exciting AND frustrating. We had an issue blown out of proportion here in Sonoma County just this week at the Funding Allocation Working Group meeting. I, along with 4 other people living with HIV/AIDS were accused of "special interest" by some of our other members (also living with HIV/AIDS). We are active members on all committees, voting members of the Sonoma County Commission on AIDS and... Michael, Harold, Lisa, Ginger, Rueben are the only 5 people living with HIV/AIDS in our county who always participate.

There are over 700 people living with this disease in care and an estimated 1800- 2100 as listed in the current Epidemiology reports. My point is that those 1100 + persons in Sonoma County could lose their jobs tomorrow and the insurance with it. This will create an even more difficult impact on the care community. Michael, Harold, Lisa, Ginger and Rueben do have a special interest. That special interest is keeping the care community adequately funded and focused on the care and needs of the entire 1800- 2100 persons living with HIV/AIDS. Thank you again for this thought provoking post. Have the best dayMichael

From what you and Zephyr say, it appears that California has not read the manual.

Here is Chapter and verse that exempts PLWHA specificly from "Conflict of Interest", unless like in my case, my organization would benifit financially from any decision of any Planning Body. As strictly a PLWHA, conflict is not even possible.

In most instances, conflict of interest does not refer to PLWH whose sole relationship to a Title II-funded provider is as a client receiving services or serving as an uncompensated volunteer. However, PLWH, like other planning body members, should not be involved in decisions that can affect entities in which they have a financial interest or a governance responsibility. Examples of financial interest include being officers, employees, or paid consultants to Title II provider agencies or to the administrative agency that administers that Title II grant.

It is important to also know that in another place in the Manual, which I don't have time to research; it states very clearly that for Allocations Committees, PLWHA's are the few who very seldom have a conflict, so therefore are solicited for voting membership on the committees. Here in Arizona, the PLWHA committee members are some of the only ones that can vote in the Allocations Process, which keeps the workers free from "Conflict of Interest".

I hope this helps. You have to take this information to the County, and the State in the case of California, as they are totally in the dark about Conflict. I think most of them are living with too much personal conflict to have a clear view of the rules.

In Love and Support.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Thanks much Moffie. Odd that you should post this today. I have been thinking and wondering where one finds this type of info for several days now. And just the thought of that initial dig in was kind of overwhelming. Thanks again for taking the time.

This is one of the areas I was going to touch on but you beat me to it. That's a good thing. You have just the reference links that I need to get started. I've just relocated to a new town in Florida, about 1hr South of Orlando which doesn't fall under Title I funding. Orlando/Tampa is the nerest EMA for me to join a planning council.

I'm going to check things out with the local health department to see what theyv'e got going. In the meantime, I have some homework to do.

I've noticed that what happens in the USA usually happens in Europe and elsewhere 5-10 years later.

I'm grateful for my care here compared to the 50 million plus poor folks in the states without medical insurance.

Our government is very keen to take centre stage globally particularly in former British Empire countries, out of some historical paternalistic, not imperialist duty. Yet they could easily make the existimg budgets go much further through better targetting and consultation with activists.

We need to show them up and hold them to their bold promises. we need to follow up individual cases. The devil is always in the detail. Just look at Ryan White's legacy.

I used to work for the NHS in London. I know how they think. Cold pragmatists. They always go on about 'Best Practice' and 'Value for Money'. You are so right about many working in this sector being in it just for the money.

Last night we had the 'Drip-feed' approach explained to us. The money always comes with strings attached and is non-recurrent. He explained that even though he has time to help all people he can't as the European Union money for instance is only for certain groups. On a micro-management level at his own centre they even excluded PLWHAs in work from using a new gym. Even though their is plenty of capacity. The reason is that the technocrats in Brussels only want to get people fit to go back to work then abandon them. It's so idiotic. So now he promises to get that changed immediately.

I am going to bump this thread until enough people get the point that this thread is the answer to the other one I have going where I ask for help with understanding. I cannot believe that people like Aldous, over in London got the point, when many of you, who's very existence on this planet, revolves around how much you get involved in the mechanics of this pandemic.

Please pay attention to this very important discussion. Only by us demanding equity, and an assurance of continued support, will any of us be able to sustain our health for the long term.

Just remember, you might have private insurance now, but when you are unable to work, due to the advanced mutations of this virus, and the continued lack of focus and support from a government, and society that could actually give a shit if we live or die; then where are you going to turn. If Ryan White is dissolved, which is right now being discussed in the halls of Congress, and the White House; what are you going to do if you get sick and loose your insurance. Please don't be short sighted. I am not a doom and gloom person, but very pragmatic, and also a Capricorn, and as Eldon will witness to, us Capricorns always follow the money. Here the money is disappearing, and we will follow.

Please pay attention.

Thanks for those of you who have responded to this thread. The work of only a few, will make a world of difference to the rest of us...... If you don't believe me, please look up the bios of Larry Kramer, Peter Staley, and many other HIV/AIDS activists of the last 25 years. One person can do more than you might imagine.

In Love and Thanks

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Moff...A heart felt thanks to you for posting this. I have some homework, to say the least. But i'm going to be happy to do it. I can't even tell you how timely this post is for me. Just yesterday, I met with my "case worker" who tried hard and meant well, but couldn't answer half my questions. So I thank you and I'm looking very forward to get more involved. I'm unable to work. But it looks like I may have just found a job, thanks for this info!Fondly, Jeff

For a problem as big as HIV if we are not doing everything we can we are clearly not doing enough.

I think the support and activism movements need a kick up the backside.

I have advertised that I'm available to work as an activist/health promotion worker yet despite my Health Sector knowledge there have been no takers.

All I've had is a chance to work on a pretty garden for no pay when I see a real need for my relevant skills.

I am happy to work for less than I did as an accountant. I think preaching a doctrine of condom use will save far more money for the NHS here in the long run than I did capping spending during tight times near year ends.

I really do start to wonder if the conspiracy theorists are right. HIV was manmade to rid the world of 'Immoral non-christians gay and straight'.

I feel invisible. But we must go on and on and on like Duracell bunnies.

Good post my buddy. It took me awhile to get to it since our power was out for four days because of storms. I am going to go over this with my honey and see if there is something we can do to get involved.

I'm always amazed at how clearly you can think in that dessert heat!

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44 year old gay man .......just broke up with the only man I've ever really loved.

Nice post Cliff. Let me throw a thought out there for you and others reading this thread.Little background; it’s been my coincidence to have been involved in the long term care of several family members over the last few years. And the one thing that has become abundantly clear is that money, or the lack of, affords the quality of care you’ll receive. Those who were on Medicare or under other government-funded care at best are minimally cared for. While those who were fortunate enough to have either self or privately funded care received much better care for the dollar. To my eye this shone through in all aspects of care. Diagnosis, treatment, short-term living assistance, long term assisted living, or hospice. In the end all are gone, some with much more dignity and comfort then others. As it stands now I’m blessed with strength, vitality and good health while living as a person with AIDS. (Can’t get my CD4 count over 200 no matter what we try, it’s dammed frustrating) I have decent enough health insurance such that I can to a degree manage my own care. But what happens when the time comes that I can no longer work. Be it illness or age. How will I provide for myself? Who, and how will my destiny be decided?As we look to the future the demands on both the funding of government health care programs, and the health care system itself are going to be extraordinary. In the current economic and retirement system how many additional millions of people are going to be asking for care? Who will we be asking to shoulder our burden? At what point will the number of people asking for medical care at another’s expense overload the system. All I have to do to see a health care provider imploding under the sheer numbers of underinsured and uninsured is walk into Denver General Hospital. I have no answer to these or any other of the myriad of question this brings up. We as a nation have a huge number of extremely difficult choices ahead of us. And for me it brings up the question of whether or not I want my care dictated, funded or not funded, decided if appropriate, or even if I am deserving of care, by some faceless bureaucrat in a gray-carpeted cubicle. I’ve no delusion those at the top of the capitalist food chain will always be the most well cared for. My government leaders will forever continue covering their collective asses. That I and the other eighty percent of this countries citizen are going to fight bitterly over what remains. So perhaps rather then fighting for increasingly smaller scraps of HIV specific funding we as a citizenry should look at the bigger picture and be fighting for realistic health care reform. The right to manage our own care. So long as there is a multiplicity of small groups fighting for individual bites of the ever-shrinking pie, we’re all slowly going to starve to death. I’ve slowly come to believe the health care system is increasingly broken. My heart goes out to those on governmental health assistance. You in too many ways are at the bottom of the health care food chain. But in all honesty most working others and I will be dammed if another dollar of our wages go to care for you. There’s too little left too care to for me at the end of each month. It’s the sad selfish reality of today’s system. There has got to be a better way but I haven’t a clue of how to get there. But I do truly believe until we collectively demand better overall we’ll continue to fight over the insignificant. And so long as this continues nothing will change for the better.

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Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Jeffery, Yes, the government data, including CDC and HHS are all behind by two to three years. This is also true with the 1.1 million HIV+s estimate in this country. That is a 2003 figure also. SAd but true. Computers have handicapped the Government into a two year lag time. Bill GAtes would be proud.

Toad. You bring up points and issues that have been on my mind since the inception of the Ryan White CARE ACt. Sobering post none the less. Somedays I thank the Lord that I have the VA system, then others, not so much.

In Love,

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne